scanxiety.

i had my first and only full-blown panic attack when i was 23 years old.  i was sitting at a city counselor debate in orleans, in the east end of ottawa.  i was supporting one of my oldest friends, who was running in the election.  i was feeling fine until all of a sudden i wasn’t.  i needed to get out.  i stood up wide eyed, wildly escaped the seated crowd, and retreated to the lobby.  i thought i was having a heart attack or a stroke.  i had never experience anything like this.  my heart was racing and i couldn’t breath.  after i had come down from the incident and decided that i could drive home, there was still a faint trace of my discomfort in the lights lining the highway, fuzzy halos glowing.

in the days afterwards, i tried desperately to make sense of what had happened.  i was fighting a cold and had been taking a large amount of echinacea — could i have overdosed?  i had a penchant for coffee and had several hits a day — had i been overloaded on caffeine?  the feeling of my body not being my own reminded me of being high — had i accidentally injected drugs and had a bad ‘trip’?

i had recently been intensely stressed about money.  i remember that i had wanted to buy a car, and go for a trip to europe, but i knew that i couldn’t afford both.  i had also recently had a rude awakening when the facade of being able to ‘do it all’ crumbled and i failed a couple of my classes at university.  had these stressors been bothering me more than i realized?  i went to the doctor, and to my counselor.  they told me i had nothing physically wrong with me, and that i had likely experienced a panic attack.

i became panicked at the idea that i could have another panic attack.

but i hid it well.  i am not a nervous person, nor am i particularly pre-disposed to worrying or fretting.  for me, there is a very specific difference between worrying and anxiety.  worry is in my head.  anxiety/panic is in my body.

enter the queen’s university counselors.  if i liked women, i might fallen in love with my counselor at queen’s.  she saved me.  i learned that anxiety and depression are related, and that i was likely struggling with them both.  i learned that the physical symptoms i had had during my panic attack were a manifestation of my feelings; but that i wasn’t going to die from them.  i learned that thoughts are just thoughts, and that they are temporary.  i developed strategies, got a prescription for a low dose of antidepressants, and shared openly with my close friends.

this was my first experience with failure, my first encounter with mental health and my first true and real struggle in life.

taming the beast

as the years passed, i thought less and less about about it.  i eventually went off of the low dose of antidepressants, and learned to recognize any symptoms of anxiety or depression within myself.

until i was sitting on a plane on the way from las vegas to monterrey.  it was my last year in mexico, and i was going through a difficult time.  i was in the midst of a breakup, and was uprooting my life to move to bangkok, thailand.  i was sitting in a window seat.  i was feeling fine until i wasn’t.  i needed to get out.  luckily, i recognized what was happening to me.  this is when panic loses its power.

unfortunately, as i got older, being in small enclosed spaces and at great heights occasionally brought on the initial sensations of anxiety/panic.  i would describe it as being on the edge of a panic attack.  i felt discouraged at times; but i learned to manage it quite well.  breathing.  self talk.  taking walks.  distraction.  aisle seats.  i doubt anyone would even know this about me.  that i carry through my life, in my pocket, this constant companion.

last fall, when my uncle was dying of melanoma, i kept having hyper-awareness of my hands.  this was another difficult time for me.  i was still reeling from the shock of my own cancer scare a few months earlier, and then to have melanoma hit so close to home, and so ruthlessly take my uncle from us… i was terrified that the same thing would happen to me.  i would drop something and then i would fear my hands weren’t working properly.  i would have trouble getting into the flow with typing, and i was convinced my hands would never work again.  at first, i thought i was quite simply going insane.  then, i thought i probably had a brain tumor.  but the answer was much simpler: this was anxiety/panic manifesting itself in my body.

while some symptoms of anxiety are the same each time, others are not.  if it presented itself in exactly the same way, i might recognize it more quickly.  once i recognized it, acknowledged it, and named it, the beast began to lose its power, and the symptoms subsided.

hello, old friend

over the past months, even though i have been going through the most trying time in my life, i haven’t felt particularly anxious or panicky.  i have often felt pragmatic, with a sprinkling of grief and sadness mixed in.  save for that day in may when i was awaiting the results of my brain MRI, when i felt pure terror.

during the first few weeks of immunotherapy, i felt energized.  i had a rotating door of caring visitors and company.  i felt physically well, and developed confidence, as i did not experience any of the very severe side effects.  and then on a thursday, in about my third week of immunotherapy, i found myself alone in a big empty house and i began to feel a familiar unwelcome feeling.  my head was clouding over.  i’ve heard it described as a sensation of ‘unreality’, or fogginess, and sometimes i even call it ‘headiness’.  but i immediately recognized it.  hello, old friend, i thought.  get the fuck out of here.

for several days after this, i felt as if i was on the edge of a panic attack.  the feeling that my body and mind were not fully my own.  a low level sensation that did not feel quite right.  discomfort while meditating, and the inability to sit in stillness.  i became annoyed and frustrated with myself which only exacerbated the feelings.  i kept thinking: why now?  i have had a number of stressful situations over the last months.  i know my diagnosis, i’ve started immunotherapy, i’m doing well.  have i developed a brain tumor?  is that why i feel this sense of unreality?  yes, i decided, it must be a brain tumor.

i had a routine appointment with my oncologist to discuss some upcoming scans and i expressed some of my fears to him:

“i think we should add a brain CT to the upcoming tests.  i’ve been feeling off.  i’ve had a few headaches, i have a sense of fogginess, and sometimes i can’t think of the word i want to say,” i confessed.

“have your headaches been severe, and led you to vomit?” he asked inquisitively.

i responded hesitantly, “uhh, no….”

“have you made serious and regular errors with your speech?” he followed up.

again, i responded quietly, “not exactly….”

he looked at me directly and spoke in a reassuring tone, “sarah, it is very unlikely that you have a brain tumor.  the symptoms you are describing sound like anxiety, which is totally normal for someone going through your situation.  i can prescribe something to help.  also, the scans are not tests.  they are important so that we can monitor your progress, make any necessary adjustments to your treatment plan and so that i can confidently support your move back to bangkok.”

ugh, i knew it!  that darn anxiety/panic again.  relentless.

i went for a visit with two of my girlfriends and i burst into tears.

with tears, came the truth.

i was scared.  of course i was scared.  of course i AM scared.  i have control over very little in my life.  i have built the monitoring CT  scans up to be the most important tests of my life.  in the past, when i’ve had a big test, i’ve simply studied a lot, which brought me success.  but you can’t study your way through a CT scan.  the problem with this scanxiety (as i have learned it is so aptly called), is that it is not only fear of the future, it is also remembering the trauma of the past.  anyone that has had a cancer diagnosis remembers those life changing words from the doctor, remembers crumpling to the ground, remembers it like it was a story that happened to someone else, but not.  the moment after which everything changes.  life before cancer/life after cancer.  the problem is it feels like there is so much that is riding on this:  a return to bangkok.  a return to work.  a return to normalcy (or something like it).  and then the irony of all ironies, is that i admitted to myself that i was also scared of getting what i wanted.  i was (and still am, if i’m honest) scared of getting the go ahead for bangkok, and having to establish trust and relationships with new doctors, seek out a new support network, and being far from the safety and community i have established here.

it is a twenty four hour a day job: accepting fear, accepting anxiety, accepting myself, cancer and all.

the snow globe

my counselor gave me a simple image that has resonated.  she had me picture my anxiety/panic like a snow globe, which occasionally gets shaken up, and other times is settled.  the anxiety/panic is never gone entirely.  it is always there, in your pocket, alongside you.   the physical manifestation of anxiety, for me, is often disconnected from the event that i’m actually feeling anxiety/panic about.  as a result, sometimes i have fallen down an abyss, a black spiraling hole before i realize that i don’t have a brain tumor, i’m just feeling a bit anxious about upcoming scans.  cancer has shaken up my snow globe a bit.  not surprisingly.  i can be angry about it, or i can just sit with the uncomfortable emotions and physical sensations, really feel it, and face it head on.

one of my dearest friends taught me this strategy that has helped me the most in meeting my scanxiety: the scan is only revealing the truth that is already in my body.  the truth.  while i’m no doctor, i can tell you that my body feels healthy.  my acupuncturist has reminded me to focus on how i feel, and not on a label.

my scans are in two days, and i will get the results a week after that.  ironically, after two uncomfortable weeks, i am no longer feeling anxious about them.  the snow globe seems to have settled, and my sense of pragmatism has returned.  what will be, will be… and just like i have handled each visit from my anxiety beast, i will continue to handle what is next.

until next time, old friend.

*this photo was taken in a cafe bathroom in the hague during the summer of 2017.  have you ever experienced the opposite of claustrophobia?  sometimes when i’m thinking about the wide expanse of the world, or the infinite number of stars in the universe, or of the deep depths of the ocean, i feel slightly uncomfortable by how small and insignificant i am in comparison.  it is a wildly magical thing to be alive, considering the largeness of it all.